I didn't realize how utterly stressed I had been over his last seizure until after the appointment today - sat in the van crying tears of relief (with- Boo laughing behind me - he's always thought I'm just a riot when I cry - rotten kid! 
).
Neuro's philosophy is seizures beget seizures, so he thinks there's a decent likelihood that the first seizure (caused by husband forgetting to give him medications, which will *never* happen again) lowered his threshold enough to allow the second monster seizure to happy 10 days later. I was hoping for this answer, though I didn't know if it was possible. One of his medications was upped at that point and we've been (knock wood) almost a month seizure free now. So this is good.
Jury had been out on this neuro until today. Boo's been stable since right before we had to leave our beloved pediatrician neuro, so this new guy had just been for medication refills. He earned my total trust today. Spent time talking with- me about SUDEP, which no one had ever mentioned to us. Explained the wicked thin line in treating a status seizure - medicating to get the seizure to stop but not to the point of requiring intubation. Explained 30% mortality with- intubation (glad I didn't know that 10 years ago when they had to intubate Boo) but the flip side is if they don't get seizure to stop, it can cause more brain injury (which I knew), heart arrhythmias, etc. He also reinforced that, yes, a lot of ER docs are not going to catch him seizing if he's not having classic convulsions because they are going to assume, based on his diagnosis, that he's near-comatose anyway. Fact of life. He suggested a brief note to go with- Boo in ambulance describing baseline state since sometimes they won't let me back in ER until they think he's stable (which last time was actually nonconvulsive seizing). We are thinking on the same wavelength - I was thinking a T-shirt or blanket with red letters on it just saying that baseline state is alert and responsive, and if he's not responsive and has rhythmic nystagmus, he's still seizing.
Neuro was not condescending in the slightest and took my ridiculously control-freak Type-A micromanagement in stride (actually, he called me an eagle, LOL). Even asked me to proofread the scripts before he signed them.
I'm just so utterly relieved. I mean, I know he could get hit again, anytime, anywhere, and chances are probably really good that he will have another seizure again someday, but it's just so nice to, for once, have a likely cause that is preventable.
).Neuro's philosophy is seizures beget seizures, so he thinks there's a decent likelihood that the first seizure (caused by husband forgetting to give him medications, which will *never* happen again) lowered his threshold enough to allow the second monster seizure to happy 10 days later. I was hoping for this answer, though I didn't know if it was possible. One of his medications was upped at that point and we've been (knock wood) almost a month seizure free now. So this is good.
Jury had been out on this neuro until today. Boo's been stable since right before we had to leave our beloved pediatrician neuro, so this new guy had just been for medication refills. He earned my total trust today. Spent time talking with- me about SUDEP, which no one had ever mentioned to us. Explained the wicked thin line in treating a status seizure - medicating to get the seizure to stop but not to the point of requiring intubation. Explained 30% mortality with- intubation (glad I didn't know that 10 years ago when they had to intubate Boo) but the flip side is if they don't get seizure to stop, it can cause more brain injury (which I knew), heart arrhythmias, etc. He also reinforced that, yes, a lot of ER docs are not going to catch him seizing if he's not having classic convulsions because they are going to assume, based on his diagnosis, that he's near-comatose anyway. Fact of life. He suggested a brief note to go with- Boo in ambulance describing baseline state since sometimes they won't let me back in ER until they think he's stable (which last time was actually nonconvulsive seizing). We are thinking on the same wavelength - I was thinking a T-shirt or blanket with red letters on it just saying that baseline state is alert and responsive, and if he's not responsive and has rhythmic nystagmus, he's still seizing.
Neuro was not condescending in the slightest and took my ridiculously control-freak Type-A micromanagement in stride (actually, he called me an eagle, LOL). Even asked me to proofread the scripts before he signed them.
I'm just so utterly relieved. I mean, I know he could get hit again, anytime, anywhere, and chances are probably really good that he will have another seizure again someday, but it's just so nice to, for once, have a likely cause that is preventable.
